What would I do without my friends? Today Talie watched Cody - drove all the way here from Lake Oswego and back in traffic! Yesterday Cheryl spent her day off watching Cody for 3 hours! The list goes on and on - Molly, VIG, JoAnn - so many people who have blessed us by watching Cody so that I can attempt to get the stuff of life done! Friends have washed & detailed my car, picked us up at the airport at 1am, given us meals, prayer, met me at Dr's appts to help wrangle Cody...I could write for pages and pages about the gestures of love. We don't have the ability to thank each of you personally with a loving and thoughtful gift as we'd like to - there are just too many people and our time is too limited. But please know that each and every person who has given to us is a treasured gift we are so grateful for. Your kindness has been overwhelming.

Today I got to the dentist - a good friend of ours who is pregnant and due a week before Cody was born. It is so bittersweet to see pregnant friends. It reminds me of the days "before" all of this happened. When I was hugely pregnant, excited, aglow with dreams and hopes for my little boy who was yet to be born. I still am excited and have many dreams - but there's no doubt these months have beaten me down and made me long for the ease of the days when I was pregnant and innocent to the knowledge of seeing my child suffer so. I feel I've aged decades in the last 5 months. But every day God gives me a newfound hope that this will work out, one way or another.

Cody's day today was pretty easy so far - woke up at 9:30 (didn't go to bed till 1am! Darn those drugs!) Took a nap from 11:15-2:30 and fell back asleep at 5p! Looks like this will be another late night. The meds make him keep very odd hours and we can't get him to stay awake if he's bent on going to sleep no matter how hard we try! So he's slumbering thru the dinner hour, no doubt to wake up at 10pm ready for many hours of playtime! Please pray for his "clock" to normalize and for him to get his sleep at the times we also need it! He's back to hovering around 6 seizures a day so the zonegran seems to still be hampering them a bit and we are still on a very low dose and have lots of room to grow it.

that's it for now - with love, Shawna

Nov. 2

Well, looks like the zonegran "may" be lowering his seizures a bit. Today they spiked back up to 9 but the last week or so have hovered around 6 a day. That's down from an average of 10 a day. And we're only at half the allowed dose so maybe we'll see some more success. Prayer requests: It is wreaking havoc with our sleep - he is often up till 1am and back up at 5am. Very hyped. And his appetite is going away drastically which is a huge side effect. The baby who was 11 lbs. at birth is getting skinny!

I talked to Dr. Chugani today on the phone (bless his heart!) He helped me understand this a bit more. He said we have to hope and pray (and yes, he said PRAY!) that the majority of the delay we're seeing is due to seizures (and/or meds) and not the underlying condition (brain abnormalities.) He said IF that's the case, and IF we get seizure control, it IS medically possible for Cody's brain to compensate, re-gain what he's lost in development, and function somewhat normally. It's a long long long shot - but it is possible. He said he's seen it happen. To add to the variables, the abnormalities could get better or worse over time. However, if the seizures don't stop, there's little hope for anything other than dramatic delay or retardation. As you know, we are on our 5th anti-seizure drug - which is not a good sign.

He also suspects this is a genetic cause - some freak collision of our genes created a biochemical defect. Weird. I always knew Don and I had unique "chemistry." Haha. Bad joke, but sometimes you gotta laugh or you'll cry!

Interestingly enough, I asked why Cody could have developed perfectly up until 6 months with such an abnormality and he answered: "the cerebral cortex matures at 4-5 months and as it matured, this defect began to emerge." Who knew?

All that to say, our little Lion is fighting a huge battle. We still covet your prayers - and we are believing in faith that Cody WILL be the king of the long shots!

"And people brought to Him all who were ill with various diseases, those suffering severe pain, the demon-possessed, those having SEIZURES, and the paralyzed, and HE HEALED THEM." Matthew 4:24

With love, Shawna, Don and Cody

Nov. 7

Wow - only 4 seizures today and Cody is down for the night (I think...he always is full of surprises once the sun goes down!) I held my breath all day - I've never seen him go 4-5 hours at a time between seizures. I felt like I was on vacation. I'm trying not to get my hopes up too awfully much - because all drugs have what they call a "honeymoon" phase where they take away seizures to begin with but they seizures return once the body adjusts to the med. However, he's been on this new one, zonegran, for 1 month. We are only at half the allowed dose too so we can still go up a ton. This is the drug Dr. Chugani recommended before the keto diet -- and this may be even more evidence that he is the smartest person on the planet. We pray pray pray this is leading toward seizure control. This past week Cody's averaged about 6=7 seizures a day...compared to life before zonegran where he had 10-12 a day. So we've seen about a 50% reduction so far. Again, holding our breath. I don't want to set myself up for disappointment, that's for sure. I've been there before. So we take one day at a time. This wednesday we are having a photographer come by for his 1 year photo shoot - and he will be wearing blue jeans that Don wore at the same age. Cute, huh!?!

That's our news - just waiting, watching and hoping as this new drug continues to work it's way into Cody's system.

love,
Shawna

Nov. 9

Well the long awaited photo shoot was somewhat of a disaster. I'd planned the perfect outfit (Don's baby blue jeans with patches on the knees and a cute red shirt.) Of course while ironing the shirt I burned a hole in it. Right about then, Jenny Benge showed up (the photog) and we just 'went with it' and shot Cody in blue jeans with his shirt off. If he were older, it would be considered "beef cake" haha. But at his age, it was just darn cute. Only problem is that he's teething like a maniac and wound up frowning or crying the entire time. ARGHHHHHHHHHHHHH! I'd even bought him a new outfit (red velvet vest, black necktie, crisp white shirt, black pants) for a more formal shot but we didn't even bother. He was miserable. He managed a couple of smiles which Jenny got on film luckily so all was not lost. But definitely not the "photo session" I had pictured in my head! She was so gracious and left with a smile - and I learned - once more - the lesson that seems to keep hovering in and out of my life: "Don't sweat it." For a perfectionist like me, who was shopping till 7p yesterday for the perfect outfit, it's a lesson that needs to be learned. But after Jenny left, I didn't feel bummed. I didn't curse. I simply took my angel upstairs and laid him down for his nap - and walking away sighed "oh well."

I'm learning to go with the flow - ease up on things having to be "perfect" (whatever THAT is!) - and most of all I'm learning that NOTHING is THAT big of a deal! So his year-old photos will be mostly of him frowning. NOT LIFE OR DEATH! I did the best I could - and I let it go. I even fantastized about making the ones with the red vest into Christmas cards - and I bought cute little red reindeer antlers for him to wear in one shot. Well, the red vest never even made it on him! And again, "oh well!" So no one gets Christmas cards this year - it's NOT that big a deal! I could fret, strive, try to get it done...but I'm learning through this ordeal of illness...to just "be" and not try so darn hard all the time. I'd rather enjoy the rest of my day than labor over how terrible things went. I'd rather enjoy my family this CHristmas season instead of freaking out getting the perfect photo, getting cards made up, and getting them all out in time. If life were different, maybe Christmas photo cards would be a priority...but for me, for now, they're just not. I find it quite enough of a job just to get up in the morning, tend to my darling son, go to our appointments, and make it home in time for daddy to walk through the door. My plate is full. And in the face of a failed photo shoot - I exclaim - "gosh - that's too bad. But i did my best." What a life lesson. I wonder how many times i"ll have to go thru these type of things before I have it down? :)

Oh yeah, only two seizures so far today and it's already 4p. Yesterday was bad - 9 total. But I chalk it up to horrible teething. Crossing our fingers...

with love,
Shawna

Nov. 10

 Darn...10 seizures today. 9 yesterday. 8 the day before. I fear my high hopes have been dashed. We upped his dose of zonegran to 100 mg. today. We can go as high as 150. What a roller coaster ride. Although I try and try...I can't help it on those "4 seizure days"...I fantasize about the party we'll have...the day I'll get to declare that those blasted seizures are GONE. I imagine the freedom of just having a day with no medicines...no Dr. appts...no watching Cody's little arms flail and his eyes roll back in his head over and over and over. I imagine going to bed without dreading the sound of him rolling over for fear that I'll look over and see him jerking to the side with yet another spasm. But so far - they are still fantasies - and a long long way from happening. Please please pray that our hopes and dreams come true - and that one day soon our dear little one will be seizure free. It seems a bit harder every day for him to recover from each one. He used to bounce back immediately but now he kind of whimpers and rolls over to his side and just stares for awhile. This was a hard day. I am kicking myself for getting my hopes up this week...yet how can you avoid it? Four seizures felt like such a vacation. I was walking on air. And now I feel I've dropped back into the black pit. Very high and low - that's kind of my personality type, I guess. I pray I'll find more even ground as time goes by.

Some good news - he seems to be sleeping better. Last night was the first time since this diagnosis that we dared have him sleep in another room. We just HAD to get some sleep so we put him in his playpen and set up our video monitor so we could see and hear him in our room. He slept thru the night (we ran in 3 different times when he rolled over a few times...and the last time gave him a bottle which he took and fell back asleep after.) It was the first time Don and I have slept in the same bed in months. We usually take shifts sleeping with Cody we can each get at least 4 hours of solid sleep a night. We've tried other times to have him sleep on his own but he wakes up screaming or seizing often enough that we felt horrible. But last night he had no seizures and he actually slept pretty soundly! A miracle! And an answer to prayer, I'm sure.

With love,
Shawna

Nov. 12

Well, I don't know what's going on. Today he had 4 1/2 seizures - and none of them were very severe. In fact, 1 was almost undetectable in terms of the spasms movements...but it did last a good 4 minutes. In all ways, this has been Cody's BEST day since diagnosis 5 months ago. Maybe it had to do with being with daddy all day...they are so good together. I had the luxury of having the entire day to myself. I met a girlfriend at Starbucks and actually SAT uninterrupted and talked and talked and talked and talked...for 4 HOURS! What a TREAT!!!!! My husband is a hero. Then I went shopping for some Christmas gifts, bought some fun prizes for Cody at the dollar store, bought myself a new pair of pants, and even bought Cody a a "swing/slide" for our living room! His Physical Therapist recommended a swing for indoors because it really helps calm Cody down when he's in a constant state of motion. One minute in the swing and he is back to being calm, centered and focused. I guess that when something is doing the moving FOR him, he can settle and rest. Otherwise, he never stops moving...trying to walk, trying to crawl, trying to roll. So my day was fantastic. I didn't get home till 6pm! I also got a full night's sleep cause Mr. Superhero took Cody all night last night too. I slept in till 9am! I woke up the sounds of my angel squealing with delight as daddy did raspberries on his tummy.

I have to say, that I've never seen Cody smile, giggle, and most of all laugh out loud! He did it for 4 hours after I got home! He laughed at EVERYTHING. He was alert, happy, coherent, and best of all - had hardly a seizure. Thank you, God for this day. Even if this is all we get and it goes back to craziness and scads of seizures tomorrow - thank you for TODAY. We needed it. The last 4 days of 9, 10, 11 seizures had done me in. What a nice break. Of course we pray and beg the Lord that tomorrow will be the same, and the day after that. But when you're this desperate - you'll take just one day. Cody's tuckered out from all the playing and laughing and is sacked out on the bed. We just upped his zonegran so i'm hoping that this is due to the medicine and is an upward trend. His big side tooth is all the way in so hopefully the teething issues is exactly what made the seizures spike the last few days.

He turns 1 year old on Nov. 26th and we're shooting for SEIZURE FREE by then. Will you join us in putting that fleece before the Lord? I can't imagine a better birthday gift for Cody or for us! Well, that and Hokey Pokey Elmo - which is tops on his bday list! Haha. He saw it at his physical therapy class and was fascinated...and ever since then I've been humming that dang tune! "you put your left foot in, you take your left foot out..." ARRGH!

with love,
Shawna

Nov. 14

Well - our joy was short lived. Cody has a full blown cold - and now so do I. He had 9 seizures yesterday and 9 today and was miserable. He (and we) only slept from 3a - 6a yesterday and I fear tonight may be worse. Poor little guy, he just can't breathe thru his stuffed up nose. I've tried all decongestants, etc. to no avail. I am SUCH a germ-o-phobe...I can't imagine where he picked it up. I definitely got it from him because he's had it for 2 days and I'm just now getting the deadly sore throat. I'll tell you, if we're not up all night from seizures and/or med. reactions...we've all got a cold and are up all night. Just seems like things don't go our way often. He was just getting some seizure control and boom - bad cold sets in. For Cody a cold is especially dangerous because his immune system isn't great due to the recent steroids. It wouldn't take much to turn into pneumonia. Plus, it lowers his seizure threshold and that turns all of our lives upside down.

We did manage to get out today (I drove him around in the car hoping that he'd finally be able to go to sleep sitting upright so his sinuses were less stuffed up.) He fell asleep for only about a half hour and we then ventured into fred meyer to get a prescription filled. To my horror, he had a seizure in the shopping cart and banged his head on the bar - causing quite a stir and a crowd. Boy when he sits upright, his head really drops to his waist during these seizures. I never really deal with that because I always lay him down the minute he has one. So he had his seizure with me holding his head up in the cart for 5 minutes while everyone watched...and people wonder why I never leave the house! Then we went to the playground where they have bucket swings...which I thought he'd love since he loves the swing at physical therapy. There was another mom there with a daughter the same age happily pushing her in the swing - and I put Cody in next to her - and he just laid in the bucket like dead weight. He just doesn't understand that he has to hold himself up and sit in the middle. He kept just sliding to the front and hanging there with his arms dangling at his sides. I keep forgetting that his delay makes him more like a 6 month old. And right next to me I saw the picure of a perfectly "normal" little girl having the time of her life. Needless to say, it was very depressing. Poor Cody - he just sat there and cried. I tried and tried to help him center himself on the swing and hold on, but he couldn't get it. The swing at P.T. is like a carseat where he can lean back - so this one was a lot different. I just gathered him up and went back to the car. And said another of my constant "oh well...at least I tried" statements. It's all I can do...try. Things are so hit and miss with him. One days he's all smiles and the next day he's screaming for no apparent reason. Such a roller coaster ride.

I pray this cold will pass quickly and not develop into anything worse. Thanks for reading and caring......

with love,
Shawna

Nov. 17

Wow - tomorrow is my dad's birthday. He never even got to meet Cody - he died 8 months before Cody was born. What a cruel two years this has been. I lost my dad - and am losing much of my son to this dreaded disease. Cody had a bunch of seizures again today - the cold is horrendous and his teething is a nightmare. Both contribute to seizure spikes so I'm trying not to assume the zonegran is one more drug that hasn't worked. We upped the dose today to 125 mg. and only have one more dose to go (150 is maximum.) I was so hopeful for this new drug - yet the seizures remain. Please, Lord, let this cold and teething go away so Cody can recover and so we can see what the med is really doing.

His one year birthday is next week - the 26th. This is hitting Don and I especially hard. We are having a small family birthday gathering - John Deere theme! I had a huge banner made up that says "happy first birthday Cody Graves" with john deere tractors on each side (yes, we are countrified folk, now!) We had a good cry when we unrolled it - both acknowledging that this 1st birthday is far from what we'd imagined. We had planned that his 1st birthday would be a celebration where we'd invite the Dr's, nurses, therapists, friends and loved ones who have all contributed to his recovery. Sadly, he's not recovered and there will no such big bash. We will keep it low key. Six months of seizures - unending, never stopping. Hard to celebrate in light of that. Instead of celebrating his recovery, we will celebrate his little tireless soul - who bravely battles this hand he was dealt with the courage of a thousand men.

I'm praying for that supernatural exchange God promises - to give me "beauty for ashes" in the midst of this grief. There is a song that speaks of the heavenly exchange that God allows -

"He gave me beauty for ashes
strength for fear
gladness for mourning
peace for despair."

I literally pray that God will take my fear, mourning and despair - along with my dreams for cody that lay in ashes...and replace them with strength, gladness, peace and beauty. I can't imagine anything beautiful about this trial - or about myself in it. I am usually tear streaked, unshowered, covered in baby food and drool, and running around like a mad woman. Far from beautiful. But I pray God finds some beauty in a heart that is breaking - yet presses in and presses on.

with love,
Shawna

Nov. 22

Cody's cold is finally abating (yippee!) Now he just has teething still in the way of us being able to determine whether the zonegran is working or not. He's still having 6-10 seizures a day so it's still up in the air. But he's much happier now that he's not up all night from a stuffy nose - and so are we!

Prayer requests: we are running into lots and lots of paperwork, appeals, authorizations with insurance so I'd love prayer for things to turn out well. He goes to physical therapy and group therapy every week and we are trying to get him into speech therapy but insurance doesn't cover it so I'm trying to find a way to make it happen.

Also, for sleep, as usual. He was up at 4am for some weird reason. The guy just doesn't sleep normally and never has.

Finally, as always, for seizure control more than anything right now.

As Thanksgiving approaches, I am reminded of giving birth to our little guy last year at this time. How sweet and chubby he was - all 11 pounds of him. We had such dreams of our lives with him and my final prayer request is that there would be a healing balm laid over those dreams that we are hanging on to with a death grip. As we pray for the best, we also know that God doesn't always provide physical healing. We took Cody to the park this weekend to swing on the swings and we tucked him into the bucket swing with a bunch of rolled up blankets so he would feel secure and not flop around. He doesn't much understand hanging on or centering himself. He LOVEd swinging! He laughed out loud for 20 minutes straight - smiled - kicked at us and had a blast. Don and I were dancing for him, waving to him, pushing him and beaming ourselves. For an instant, we felt like a normal family who was just enjoying our child. I long for more moments like those where seizures don't invade...where our little boy can just be a little boy. Where we don't get back in our car to the vision of him jerking in his car seat and shreiking as another seizure takes over. We were instantly sobered as we drove away - and reminded of the battle we face. I said to Don, "most people get to have moments like we just had at the swings all the time with their baby. Can you IMAGINE how that would feel?" He nodded. We both realized that it was a snapshot we won't forget and that as Thanksgiving comes...we will be thankful for a smiling, laughing, giddy baby boy who loves to swing!

with love,
Shawna

Thanksgiving

Hi there - Cody has given us a scare tonight. He woke up and began doing what looks like a brand new seizure type called gelastic seizures, or laughter seizures. He would laugh hysterically for a minute then go into constant looks to the left and right. Then he'd laugh again (not a normal laugh - an eerie cackle that almost looks cute but is super creepy when it keeps recurring.) Then suddenly he'd shriek and cry for about 2 minutes as if he were scared to death. Then back to the left and right head movement. Then more laughing, then more shrieking. The whole thing lasted an hour before we finally called the neuro on call and he advised us to do the rescue med. So he's comatose now and will be for quite some time.

It isn't uncommon for infantile spasms to be accompanied by other seizure types. But you can imagine our frustration, aggravation and desperation as we try to battle I.S. and get a potential brand new seizure type to deal with. We pray this all goes away by tomorrow and this was some fluke. We seem to always run into seizure emergencies on holiday weekends!

Please pray that this would be nothing more than a weird hour - and that this very odd and scary behavior goes away immediately. I just cannot imagine going thru another battery of EEG's and diagnostics to try to determine what this is and then what other meds to add to his current *bleep*tail. It's his first birthday Saturday and it's so defeating to have to put out new fires all the time. Please pray for us. I'll keep you posted.

with much thanks,
Shawna, Don and Cody

Nov. 26

Hi - thanks SO much if you got these emails in time to pray! It seems to have worked. Cody woke up this morning back to his normal goofy self. "Normal" meaning his typical 4 seizure morning instead of that crazy head turning laughing crying thing that plagued us for the last 2 days!

The neurologist on-call went over his case at length and wanted us to keep him sedated all weekend with tranquilizers til Monday when we can have an EEG. The theory being, this weird new activity was going on for hours at a time and IF it is indeed seizures, you just can't allow them to last that long or they can do serious damage to the brain. So we got the prescription filled - but by then it was bedtime so we decided to put him to sleep and re-evaluate in the morning and voila! He woke up this morning like his old self. He must have known it was his birthday! It would have broken my heart to have him spend his 1st birthday sedated all day and night!

If we see signs of those laughing (gelastic) seizures again, we will have to have another EEG this week - but I'm trying not to borrow trouble at this point. We did cancel his family birthday party cause all our relatives are sick and he can't be exposed to that...and we'll try it again next week. So for today daddy and I will just enjoy him! We're taking him to ride the carousel which he will love!

Thanks so much again for your care and support. It helps bridge us through crisis times like this one.

with love love love,
Shawna, Don and our gorgeous big 1 year old boy!

Nov. 28

Cody still hasn't shown any more sign of those weird laughing seizures - thankfully! Right now he is enjoying a nice suppository to get things..."down under"...going. His meds tamper with his digestive system big time. I hate to ask this, but for those of you who check here for prayer requests - would you consider praying for - um - "regularity" if ya know what I mean? He's gone 5-6 days between bowel movements and it's getting to the point where he'll have to go on meds for it if it doesn't get better within the week.

Today was a tough one again - he'd had 7 seizures by 7:30am. At group therapy (which consists of Cody and 4 adorable little girls with Downs syndrome) he took a bite out of one of the poor dear little girls! He chomped right down on her arm and left a bite mark equivalent to a shark attack. He's teething like a maniac and anything that comes within 6 inches of his mouth, he will bite! The little girl's mom was SO wonderful - but I bawled - it was quite a bite and nearly broke her skin. She put an ice pack on it and recovered within the hour - but what a crazy morning. These little girls are so much farther along than Cody - while they are waving and clapping hands - Cody is just squirming on my lap and screaming. He's just not doing any of the milestones like peek a boo, mimicking, talking, waving, clapping. It's a rare day at this group where he'll make eye contact and play with a toy. He's usually in his own world trying to stand up the whole time...or find something to chew on. It's disheartening - at home we don't notice it so much be when he's with other kids his age (altho they are delayed as well) it's so hugely apparent that he's pretty much stood still in time since his 6 month birthday.

We are debating which drug to try next - the zonegran is at it's highest dose and he is still having lots of seizures. It will be the keto diet or clobazam. I have a neuro appt. this week to try to begin the decision making process. Dr. Chugani in Detroit is in favor of more drugs - while I favor the keto diet. I don't want to veer too far out of his recommendation because I want him to continue to oversee Cody's case...so it's a bit of a dilemma. Please pray for our decision making - that it would be a clear, apparent decision. The keto diet is a HUGE commitment involving weighing every single bite he takes and many other hoops to jump through daily. Feel exhausting right now. But not as exhausting as watching him suffer the side effects of more meds alternating between being a zombie and being psychotic.

We had a nice 1st birthday altho he didn't much care for the carousel ride! But we bought a Christmas tree and trimmed it and he loved the lights...and we bought him his big present...a swing we are installing from our ceiling! He LOVES to swing and it really helps calm his body down from all the moving he feels compelled to do...Don's going to put it up soon.

That's it for now - much love to those of you who take the time to check out the latest news on our little guy.

Shawna